The intricate labyrinth of this paradox exists within the assumption that a social impairment in and of itself, however that is defined and experienced in each individual (AS) life is tantamount to social disconnectedness   

Gregory B. Yates, in his writing, “A Topological Theory of Autism,” – the website – www.autismtheory.org/topotheory.html explains that the three founders of “autism”, Eugen Bleuler, Leo Kanner, and Hans Asperger, “clearly saw other features of autism as secondary to social disconnectedness.” and emphasizes that this disconnectedness “…is the central, eponymous feature of autism it is the primary feature…”– “it is social disconnectedness that most defines autism…”   

The degree to which there are differences, generally, between autism and Asperger’s Syndrome (AS), more specifically, in terms of this social disconnectedness varies greatly with each individual. It has been my experience that the manifestation of this social impairment and social disconnectedness also varies greatly between those with more classic forms of autism as opposed to those with Asperger’s Syndrome (AS). Even within those with AS the extent to which this paradoxical synergetic syndrome is present depends upon many individual factors including age of diagnosis, intervention, support, counselling and general educational intervention.   

I experience this social disconnectedness, as an adult with Asperger’s Syndrome (AS), in ways that I imagine are more difficult for me and others like me than they may be for those with more classic autism. It is the awareness that one has with AS that often brings with it a more painful lack of connection. Many, like myself, with AS, to varying degrees, have strong desires to try to be as social as we can. This is, however, coalesced with what is an equally strong aversion to being social.   

This paradox of simultaneously desiring and feeling aversion to social connectedness is born out of a lifetime of difficult and painful experiences in the social realm coupled with a lack of understanding and difficulty in truly being able to feel a sense of joining in what others are experiencing as a shared experience.   

I am keenly aware, in the social realm, that while I have learned to do many things that one is supposed to do from all accounts and appearances I do not experience them in the same way that neuro-typicals (NTs) do. There is still this feeling of not totally understanding the feeling experience of the shared social experience. This reality is accompanied by the anxiety and the stress (overload to my system) that much of this activity produces within me. To state it outright and forthrightly, I do not derive joy from anything social.   

My experience of joy is very much a by myself internalized proposition. Knowing this can be, at times, a source of frustration and pain. Even when I am social I am not really totally there. It’s difficult to explain this but as Yates explains, “Autistic people live like Tantalus*, with the fluent social interaction of others suspended before their eyes, out of reach.” I can relate to this. To try to actually join in and feel a shared experience socially is like reaching for forbidden fruit that moves ever so slightly back every time I reach up and forward toward it. I have been in many a social situation where I do just end up observing because the social interaction of others is suspended out there before me and for me is out of reach in terms of experiencing it the way that others appear to be and report experiencing shared meaningful times that fill them up. Trying to socialize, which I don’t mind in small doses, despite the pain of it all, for me is so stressful most of the time that unlike my NT friends empties me out leaving me just wanting to retreat back into my own world.   

The fact that most NT’s describe socializing as being a “filling up” experience that adds something to them and I know that it is the opposite for me, I don’t see this as needing to be defined as anything else aside from a profound difference after its recognition.   

Yates continues with the assertion that, “Social disconnectedness is the horse of autism: Secondary features are baggage in its cart.”   

Not everything about this social disconnectedness is experienced as baggage. That said, I think it would be highly negating if I were to say that this disconnectedness doesn’t in fact leave an adult with AS with some baggage. It does.   

The most difficult aspect of this baggage, which I’m sure varies with each adult with AS, though having, no doubt, some common themes, is that we are left to fend for ourselves with it. There are (with rare exceptions) no services for adults with Asperger’s Syndrome.   

In my own experience, the mental health issues and co-morbid issues that can exist with AS and its incumbent or subsequent baggage, are not effectively being dealt with by traditional Mental Health delivery systems. While there are some therapists who will assist adults with AS they are not accessible to those without the funds and even then they are rare as most, if not all resources are currently focused on children with autism and/or Asperger’s Syndrome.   

Today’s children are going to be tomorrow’s adults. The baggage that they will encounter as adults will still be sitting here, as is mine and that of other adults with AS. I continue to not understand the lack of services for adults and for those who are transitioning from adolescents to adulthood with all its more complicated issues.   

I must stress here too that not all that AS brings to my life is about baggage. In the arena of social disconnectedness and trying to navigate the world of social beings however, yes, I have some baggage that I am continually aware of, working through, and trying to come to terms with. In this area, this baggage does impinge upon my self-acceptance, still, though I’m getting through that more now too. This is the reality of a paradox that adults with AS must not only live with but wrestle with in order to not be left feeling less than. This is why I stress that we are differently abled as opposed to the common societal stereotypical assessment that we are just disabled   

Yates also asserts, “While some secondary features of autism are unpleasant, in a social world one autistic trait is truly devastating. That is autism’s defining characteristic itself — social disconnectedness.   

I have found this trait quite devastating. While I continue to make progress in terms of what I have learned about mapping my social efforts I continue to find them often as painful as they are anything else. I am still in the process of dealing with this fact. The fact that I have to live with a high degree of social disconnectedness that I have enough insight about to feel saddened by at times. It is here, I have learned, that my self-acceptance depends upon my ability to continue to learn and grow in my ability to use compensatory strategies to meet my needs in the adult arena of relating.   

Yates states that, “Autistic people vary in their desire for social interaction. However, even those who do not desire social contact can be devastated by its lack, for thriving in human society depends on social ability.”   

I agree totally with Yates here. I have known other adults with Asperger’s Syndrome. I’ve seen vast differences between them and myself in many respects. I’ve also noticed that there are numerous and vast differences between men and women with Asperger’s as well. (More on this in an up-coming article)   

I have been devastated by “its lack”. The lack of socialization in my life. By what remains (or certainly feels like) despite my best and most fervent efforts to socialize, relate, and be available in my primary relationship, a feeling of disconnectedness that often brings me back to a familiar pain that like a brick wall sitting between me and the world of social ability, has and continues to affect my thriving in the way in which most people define and value thriving   

All is not lost here however. I am a great believer that even when diagnosed with AS in adulthood, as I was at the age of 40, we can make progress. I have learned a great deal. I continue to learn to compensate and to let those closest to me know what I need in order to be able to build bridges to them and have them build meaningful relational bridges to me.   

I also believe that despite not experiencing a kind of social ability that clearly indicates thriving to our human society, I am thriving and will continue to build upon this thriving in my own way as defined by my own understanding, needs, wants, and my continued dedication to straddle what is at times a very unforgiving philosophical paradox.   

What is defined as social impairment, again, can be construed as disabled or contrastingly as differently abled. One must take to task the notion that we are all supposed to be the same or that we all must have the same values and capacity in the social realm.   

Having Asperger’s and knowing it should be a gateway to understanding not some societally imposed label that implies lack and that sees that lack pathologized.   

It is my hope and my intention the more I come to understand my Asperger reality and the more I write about it that my readers will come to appreciate the differences that manifest in many ways that are the indicators of difference in brain functioning. That NT brain wiring is not superior to the brain wiring of those with Asperger’s and visa versa. This is all about difference and more specifically, acceptance of that difference and allowing each group of people to live as they must and flourish as they will.   

To this end, coming out of this most basic difference in social ability and social connectedness or defined disconnectedness it is my hope that the system and parents of children with AS will stop believing and insisting on trying to normalize the autism/asperger’s out of their children. We are born the way we are for good reason. Let society expand its definition and understanding of worth, and change itself, and stop requiring that those of us on the autistic spectrum change or have to fit the NT mold in order to matter, to be functional, and to be able. We are very gifted and talented in our own ways. Who we are needs to be “good enough”. It needs to be “good enough” firstly to parents, secondly to society and equally to each adult diagnosed and left to fend for themselves, with Asperger’s, in adulthood.   

We need bridges of understanding to and from each other. We do not need to be the same. We are all okay as we are, differences and all.   

© A.J. Mahari February 2005    

•Tantalus – (Greek mythology) a wicked king and son of Zeus; condemned in Hades to stand in water that receded when he tried to drink and beneath fruit that receded when he reached for it. (Source: www.dictionary.com)   

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(CNN) — “People with Asperger’s syndrome would be included in the same diagnostic group as people with autism and pervasive developmental disorders, according to new guidelines under consideration by the American Psychiatric Association.

Psychiatrists are in the process of revising the guidelines, known as the Diagnostic and Statistical Manual of Mental Disorders. The manual has implications for how psychiatric drugs are developed and prescribed, what treatments get covered under insurance plans, which approach doctors take in treating their patients, and how patients view their own identities.

Anyone who has received a diagnosis from a mental health professional has most likely had his or her symptoms defined by the guidebook.

The revisions, which will be considered for the DSM’s fifth edition, due in 2013, were made public Wednesday at DSM5.org.

Scientifically, the distinction is correct; the research on people with these conditions has shown that Asperger’s is on the mild end of the spectrum of autistic disorders, said Dr. Michael First, professor of clinical psychiatry at Columbia University, who worked on the version of the DSM that is currently in use.

Of concern is that Asperger’s has been destigmatized and autism has not, he said. Over the past 15 years, communities have formed around Asperger’s, and the condition has taken on more positive tones with the notions that Albert Einstein and other intellectual luminaries may have had it.

Given that Asperger’s has become more acceptable, First favors keeping it as a diagnosis.

“This is a case where the science of the decision and social ramifications of the decision are separate,” First said.

But the DSM does not make diagnoses based on the stigma of one group over another, said Catherine Lord, director of the University of Michigan Autism and Communication Disorders Center, who is on the American Psychiatric Association committee looking at autism.

“Many people prefer to use the term Asperger’s, and we’re not saying that you can’t describe yourself that way,” she said. But the research shows “no scientific evidence that there are separate syndromes.”

 Source: CNN Health

Catherine Lord,(member of the American Psychiatric Association committee looking at autism) quoted above, by CNN, said, “… the DSM does not make diagnoses based on the stigma of one group over another” and that “… the research shows ‘no scientific evidence that there are separate syndromes.’ “ Well, might be too commonsense to actually consider anything to do with the stigma or how it can effect countless lives right? I am not sure that anyone has tried to argue that Asperger’s and classic autism or ASD are “separate syndromes”. I think appropriately the distinction that was made, and I think that needs to continue to be made, has all to do with degrees of the autistic spectrum. After all it has long-since been referred to as a spectrum with understandable reason. That is not the same as trying to say they are separate. However, how on earth can anyone then define them or classify them as the same just because they can say there isn’t any ”scientific evidence” to prove they are separate? Say what?

This leads me to wonder what is really behind this. I say that because Lord’s “reasoning” doesn’t seem very sound. To say that AS is the same as autism – or should be classified that way – defined that way – diagnosed that way – because there isn’t any “scientific evidence” that they are separate syndromes flies in the face of the vast differences that have been identified and acknowledged for some time now. Differences that matter. Differences that help people to understand themselves and to learn to cope with all that they have to cope with. Differences that do, I think, negate the sameness that would justify lumping them together or merging them.

What could be helpful about going backwards in definition, experience, and understanding?

And it gets worse really, also quoted by CNN on Anderson Cooper’s 360 Blog: “Dr. Charles Raison, psychiatrist at Emory University, acknowledged that “autism” is a “frightening word,” and that moving Asperger’s under autism may pathologize it more. Still, it is more accurate to call it a form of autism, he said.”

So, despite pathologizing those of us with Asperger’s Syndrome more, Dr. Raison believes that being more accurate and merging the DSM definition is more important. Who will this possibly benefit? In fact, I know as someone with AS myself, that many of us actually work with and talk often with parents of children with varying degrees of autism on the spectrum up to and including classic autism and that the fact that Asperger’s has made it somewhat out from under a lot of stigma and pathologizing to be more understood - not just negatives but strong positives too –  long enough to help others understand and to give hope that the autistic world (worlds really) can often, one way or another, to one degree or another, connect with the neurotypical (NT) world.

It’s just that no matter what you classify all of us as, we can’t, and many don’t want to anyway, conform to NT thinking. This means that neurotypicals need to stop trying to change their aspie or autistic kids (adults even) into NT’s. It’s just not in the hard-wiring. Difference needs to be respected. What NT’s define as disability is truly a different ability – perhaps one NT’s still don’t well understand. For all the really brilliant, creative, and innovative people throughout history identified as likely having had Asperger’s Syndrome, NT’s – yes even the people on the DSM-V committee – need to ask themselves where would the world be without the tremendously valuable contribution of many with Asperger’s Syndrome whose brains were, thankfully, wired differently?

I think it reasonable to conclude that this proposed merger of Asperger’s Syndrome with Autism and PDD’s is to serve some function or purpose for those who define things and diagnose things. It can’t possibly be being forwarded to help anyone on anywhere on the autistic spectrum.

The revisions are being considered for the DSM’s fifth edition, due in 2013. They were made public Wednesday at DSM5.org, and are available for public comment until April 20, 2010. I would sure urge anyone who, like myself feels very strongly that this change does not make any sense at all to let this committee know how you feel. Every voice counts.

If they make this change it will cause a tremendous amount of confusion. I don’t think people with Asperger’s Syndrome (AS)  aren’t aware that AS is a form of autism and that it is described as milder and has its own traits. Traits which of course not all people with AS have in the exact same ways or numbers or to the same degree.

However, to think that if these changes are made in the DSM-V that someone like myself would be labelled autistic right along with someone who has classic autism or another form of a pervasive developmental disorder (PDD) (no disrepect meant to these groups of people) the result could only be massive confusion from all who are not professionals. It would also mean that the ground gained in that Asperger’s Syndrome has travelled out of that abyss of stigma would be compromised at best and perhaps lost at worst.

It would mean being even more misunderstood than people with AS are now.  It might also lead people with relatives with classic autism to question why their loved ones are one way and many of us are quite different – if we were all diagnosed or “labelled” the same. It would likely also mean that many with AS will have a much more difficult time finding appropriate services. For adults and women with AS in particular it may just leave us even more invisible in terms of any support or help that many need than has been the case to date.

What do you think? If you have Asperger’s Syndrome, or a loved one with it, does this make any sense to you? Do you want to have to try to explain to people that you have autism? Can’t you just hear it now? Who will understand? How can this be a positive change for anyone?

© A.J. Mahari, February 12, 2010

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• “Many individuals with Asperger Syndrome exhibit extensive knowledge of a specific interest and therefore are capable of major accomplishments.
• Although Asperger Syndrome can be first detected in childhood, many individuals are not diagnosed until well into adolescence or adulthood.
• The cause of Asperger Syndrome is not yet established, but a leading theory at this time points to genetic causes. Many individuals diagnosed with Asperger Syndrome identify similar traits in their family members.” 

             Source: Aspergers Society of Ontario

You might think well, if Asperger’s Syndrome is genetic and on the autism spectrum and since it is a pervasive developmental disorder that that may mean there’s nothing that can be done to help someone.  For those of us diganosed in adulthood there are even more challenges because any chance for early intervention, counselling, psycho-education, social skills training and so forth has been missed. And, once in adulthood there are very few places one can go for this assistance, if you can find anywhere at all that works with adults.  Most of the resources used in treatment and managing Asperger’s Syndrome (AS) are in place only for those under the age of majority. So, are you just stuck with it? How can you change anything when there isn’t a way to actually get rid of it? Mind you, most aspies I know, and I include myself here, would not want to get “rid of it” even if it was possible to do so.

Not everyone diagnosed with Aspergers is the same. Not everyone diagnosed with Aspergers has all the traits or has certain traits as strongly as the next person. It is important, if you are an adult with AS, to look at what your strengths and weaknesses are. For many with AS common strengths include a high intelligence and strong interest in a least one area of narrow focus. While this narrow focus can have its drawbacks it can also be harnessed as quite a strength in many ways. An obvious and quite common so-called weakness for those with AS is social impairment. However, I have come to realize that the way that is defined is very genernalized. Each one of us needs to examine our own abilities and challenges in this area particularily. I say so-called because to the degree to which one is socially impaired or not can depend quite a bit on your own idea of what that means for you as an individual.

One of the major aspects of self help that can be of great assistance to those with AS is learning more about self-acceptance and respecting differences, to the degree that you understand the ways in which you are different from the average NT. Even if NT’s around you don’t understand or respect your differences its important to not take on the judgment or misconceptions of those who cannot understand what its like to have AS. NT’s are often very confused by a lot of the ways in which we think. Just as those with AS find many of the ways that NT’s think a little other-worldly too. It is equally important to realize that a lot of what we do differently, or the ways in which we may think differently, can be positively framed in realizing your capability to function in and through what is a different ability.

I have come to realize in my own life that having AS doesn’t mean, for me in my life, that I am disabled. I am differently abled. I may have many differences in how I function – known as aspie lack of executive dysfunction – which I have found through my own self help efforts can really be transformed into different ways of functioning. Again, the key is changing the way you think about difference and being the one that is different. What NT’s call dysfunction can be turned into your own undersanding of many different ways that you actually do function – this aspie functionality is just not well understood by NT’s and of course is not the same as NT functioning.

You really can create change in your life like anyone else – like your neurotypical (NT) counterparts. Change for some with Asperger’s means personal growth and evolution in understanding and learning for many. For some it might be more about finding productive and workable compensatory strategies. Social strategies are also important to explore and implement. They can take practice. However, if you learn to be kind to yourself and avoid judging yourself you will find that what you practice and what you apply from self help philosophy can and will be very helpful.

As a life coach I have learned to apply self help strategies in  my work with many clients with Asperger’s Syndrome. I have, of course, also learned to apply much of these same self help strategies in my own life. The first step in ensuring that you can make the most out of the self help you can learn much more about is to have an open mind about how much you can empower yourself to find ways to cope and ways to compensate for what isn’t exactly entirely changeable. Adaptation is a key facet of applying self help to your life journey with Asperger’s Syndrome.

 ©  A.J. Mahari, February 5, 2010 – All rights reserved.

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The most central challenge of being an adult with Asperger’s Syndrome is self-acceptance. Closely followed by radically accepting what having AS means in terms of being different from those who don’t have AS – neuro-typicals (NT’s).

It is important to realize that as aspie’s it can seem like there is this NT-everyone else out there, as if all NT’s are alike or as if all NT’s have the same abilities or levels of functions – they aren’t all alike and they don’t all have the same level of function at all.

It can seem like you are marginalized if you have AS, and even moreso for women with AS. The truth about that is just that there are more NT’s than there are those of us with Asperger’s. Having a practical radical acceptance of how that tends to create and for some support their stereotypes can mean giving yourself the gift of not twisting yourself into an upset pretzel at that the reality that you are different from someone who is NT. We have to remember that the differences aren’t all stacked against us. In fact, having Asperger’s does mean having some unique skills and in most cases a very high IQ.

©  A.J. Mahari, February 1, 2010 – All rights reserved.

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Neuro-typicals need to understand that they really cannot truly know what it is like to have Asperger’s Syndrome. That’s a good place to start. Sound too simplistic or obvious? It is an important distinction to keep in mind because you might think you are offering someone with Asperger’s help based upon what you would experience as being helpful.

What most neuro-typicals find helpful or recognize as support is, more often than not, not the same for people with Asperger’s. If you approach the person with AS in your life from your own perspective without consideration of the differences in perspective, experience, and interpretation of those with AS the results will often yield more frustration for both parties involved.

It is also important to not put your own expectations upon your loved one or friend with AS. For many people with AS the help, caring, and/or support of others feels intrusive to them. It can be experienced as being a major stressor. It can lead a person with AS to retreat more inside of him or herself as a reaction to the ways they know they are different. The very things you may be stressing in trying to help may in fact leave the person with Asperger’s feeling judged or criticized because they do not have a common reference point with you from which to share in the reality that you care and are trying to help them. 

As someone with Asperger’s who continues to push all my limits in learning and mapping aspects of life and relating where I have a different ability – commonly referred as “disability” by NT’s, I myself, have experienced others trying to help me at times when there wasn’t any help they could really give me. We didn’t have a shared perspective, understanding, or strong enough commonality in our experience for a meeting of the minds that could prove to be beneficial versus frustrating. I have also experienced people trying to help me over the years in ways that were about trying to change who I am and how I function. That doesn’t anger or bother me but I have learned that I have to point out that what I do and how I do it, just because it is different, doesn’t mean I’m doing something wrong. I’m sure there are easier ways or more organized ways to do many things but they aren’t things that fit the way my mind works – they just don’t jive with how I think and what will work for me.

I’m sure the same could happen in reverse. If i were to try to help out a friend of mine, offering advice let’s say, about something that they do and how they approach it or do it, and gave my NT friend aspie methods of doing things how could I reasonably expect that they would change the way that they think and experience the world to fit my Asperger ways? That would prove frustrating for both me and my friend.

Help and support aren’t the same thing. Support is often met with less stress and anxiety than efforts to help. If you are a neuro-typical and you are thinking about helping the person with AS in your life ask yourself, what your goals are. What are you trying to accomplish and why? Is it for the aspie or more for you? Are you invested, perhaps without realizing it, in having the person with AS in your life be more like a neuro-typical?

This is an example of an unrealistic expectation that will leave you frustrated in trying help and that will leave the person with AS feeling intruded upon and/or stressed out by your efforts to help. Often when you want to help you want to see change from someone else rather than changing the way you approach a person or situation.

Sometimes the best “help” is accepting the person with Asperger’s in your life for who he or she is. NT’s will benefit from education themselves about Asperger’s Syndrome generally. They will also benefit from going one step further in asking the person with AS in their life about him or her specifically because each person with Asperger’s is an individual. We aren’t all the same. We don’t all have every trait or listed manifestation of what Asperger’s is stereotypically described to be and mean.

Differences that aren’t accepted will continue to fuel exhaustion and exasperation. Those feelings are generated in those trying to “help” who are really seeking to change someone into thinking, being, doing, acting like they do – in other words – trying to get someone with Asperger’s to act as if or find a way to be neuro-typical. It just doesn’t work.

©  A.J. Mahari, January 4, 2010 – All rights reserved.

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This applies whether you have Asperger’s Syndrome or whether you are a neurotypcial (NT). So, you see, we do have something in common after all.

There are many different paths and individual differences among those diagnosed with Asperger’s as well. I believe that along with these individual and personal differences are interwoven the many distinctive ways that AS manifests or is evident in males and females.

Just as there are a plethora of differences between those of us with Asperger’s and those who are NT, there are at least that many differences between each one of us with AS. While we share many traits in common and are thusly identified and diagnosed as having AS this does not make us anymore all the same then all NT’s are all the same just because they are neurotypical.

There are so many paths. There are paths that we choose to take, in life, and there are some paths that are chosen for us. I see having Asperger’s Syndrome as a path that was chosen for me. It is a reality that has taken much but that has also given much and promises to give much more to me in the future. A road or path less traveled apparently. It is a path that encompasses a journey very far from ordinary. Having AS presents challenges that highlight and only serve to strengthen my most inquisitive resolve. Difficult to explain. Complicated to live with and process. Interesting to call upon in all the social/relational situations in which I am impacted the most by it.

I have been told by professionals that AS is actually the source of a lot of my strength and that as I continually seek to profoundly understand myself and how to relate to the NT world better there are ways that I can take this path and have it be an enhancing experience. I am just beginning to tap into this now as my self-acceptance continues to grow. This is a newly formed realization and belief of mine now based upon enough NT input combined with my own AS understanding. This is a testament, for me, to the reality that there are so many paths. I think ever since I was diagnosed I had a mindset that there was only one path or one way and that was the NT way. I had believed that any other way was less than, flawed, dsyfunctional, and abnormal.

It is so freeing to be opening much wider to seeing my path and journey in life as valid in and of itself. I am able to do this now because I can esteem myself for who I am the way that I am. I no longer feel like I have to apologize or make excuses for who I am or how I am. I don’t feel or believe that I am in any way less than because I am not NT.

Finally, the soothingly-sustaining entrance opening up paths not realized in my previously tormented and pent-up existence.

I have also been told by professionals that I am “very high functioning”. Okay, well, I am still trying to figure out if this is a good thing or a bad thing. Truthfully, I realize there are many blessings in being high functioning. It is my experience that there are also considerable challenges associated with this reality, this path, this way of being AS in an NT world. It is not without heart-wrenching pain. The pain of knowing one is other, outside, different, and being profoundly aware of all the times in the social/relational NT context I simply don’t get it. In the past it has been disgustingly devastating to me over and over again that no amount of applied intellectual prowess on my part has been able to ameliorate what I refer to as asperger lostness.

It seems clear right now though that I stand on the precarious precipice of evolving edgy contradiction – correlating my high functioning AS path with the indefatigable paths of the NT world of existence, connection, and communication. I feel compelled to continue to push my limits.

Through this ardent approach to the challenging of my limits I have found that there are a myriad of archetypal paths to be discovered and synthesized as I now consciously travel this barren wasteland, this seeming vacuum of void, this largely collectively unmapped adaptation of paradoxical dualistic survival by creating my own algorithms.

The algorithms that are relevant to my enterprisingly energetic exposure to all that is non-aspie-like are step-by-step problem-solving procedures that I am continually processing and mapping out to assist me in developing a stronger sense of the lay of the land on planet NT. Specifically the lay of the social/relating land.

In my qualitative quest I am now buoyed by my new understanding, and more importantly, my new acceptance of the fact that I, being on the autistic spectrum and having AS, need to acquire my knowledge base and working understanding of socializing and relating cognitively. I am not able to acquire it or understand it through observation, or the trial and error that NT’s learn social skills by. What a pivotal piece of the over-all ever-unfolding puzzle this is for me. It seems and feels strange and yet it is a huge relief to finally get this.

Clearly, there are so many paths each of us can choose to travel that will facilitate our connecting and communicating capacity and capability.

© A.J. Mahari, March 1, 2005

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The explosion of social networking sites like Facebook and others – and I’m not talking about dating-type sites – that’s a whole other thing – has brought with it the idea that the internet experience should be interactive. I wonder why. I truly do. I have been told by NT friends and others on the internet as well what is so wonderful about all of this interaction online. I don’t think I get it. I mean I blog, okay, but I have never been one to blog to get comments or to blog and wait for comments. Not that comments aren’t welcome, they are. It’s just that for me blogging is about saying what I have to say – period. It’s about sharing what I have to share. It isn’t that interactive for me. Ironically most of my blogs are not crammed with comments. I don’t know why.

Social networking sites and even twitter – in terms of personal tweets – leaves me scratching my head. I have thoughts about it, I observe it, but I really must be missing something. I got on Facebook the other day for the first time in months. I noticed in the feed that many of my “Facebook Friends” like apps for sure. They are starting zoos and doing something or other in some place called “Yoville” or something like that. Honestly, when I see these messages I’m like, okay, whatever that’s about. I mean I understand what apps are but the devotion of the masses – nope – that I don’t get? Anyone else? I wonder if my not getting it is just an Asperger thing or if it has more to do with the fact that perhaps many others, even NT’s don’t get it?

What do I mean by not “getting it”? I mean that I don’t see the reason or purpose to be ‘apping’ as a means of what appears to me on my screen to indicate some combination between some kind of “gaming” and perhaps something that is socially pleasing? I don’t know. Do you?

I understand that to some degree social networking for business or web endeavours has merit. I must admit, even that I do very little of. Am I really missing something? Beyond even that however, I the more I get messages from people, from networking sites and apps and stuff everywhere I turn on my computer online, the more I absolutely don’t get it. So, what am I missing exactly? Is this app-networking like a real-life social situation wherein people join in some activity for the heck of it because it’s what everyone is doing? Because it’s the “in thing” – the thing to do?

Okay, I’ll stop guessing. I wonder how many others with Asperger’s Syndrome find themselves puzzled by all this social network app and seemingly endless communication? Is it a world onto itself? This aspie is resisting it becoming a part of my world as hard as I can. I really am. Intellectually I get it but socially or inter-personally, I have to admit I do not get the value or the reason or the purpose.

I long for the good ole online days where I could just write on my sites or blog or what have you and receive email. That was simple. It’s purpose rarely complicated.

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If you have Asperger’s, have you ever felt this way? I heard recently from someone with Asperger’s Syndrome who wants to remain anonymous but who asked me to post something they shared with me on this blog.

The person who sent me this email is a 44 year old woman who says she just is at a point of such emotional pain – an emotional pain she described to me as seeming not only endless in terms of her social isolation but an emotional pain that she realized recently she has always felt and struggled with.

This 44 year old woman asked that I just call her E. E and I had a long conversation about the reality and nature of social isolation in Asperger’s Syndrome. I know myself, it’s an isolation that isn’t always felt as isolation as such but it can bring about many different feelings. I think that for many with Asperger’s Syndrome issues within the social realm of life cause varying degrees of emotional pain and bouts of despair and/or loneliness that need to be coped with. They can often come and go. More and more in my life they seem to come rather than go though.

“I am not a person who thought that I would ever want to take my own life yet I find myself feeling this way a lot lately. I don’t think I want to take my life. I know that sometimes there is just such a deep pain that I have absolutely no idea what to do with that it pushes me into feeling total despair.

I watch people socialize, as if it was a sport or something – a sport I can’t play, don’t get, and that makes no sense to me. A sport that I sure don’t have the rules to or for. Whatever it is that people are sharing seems important to them. I don’t get it. I really just don’t get it. It is foreign to me. But then I look at my own life and I don’t have any friends. I don’t have any family. I am not connected to anyone, place, or even thing. Sometimes that matters and sometimes it doesn’t. It’s hard to articulate.

All I really know about these feelings of despair is that they come out of feeling like I don’t belong anywhere. I don’t feel like anyone cares about me. I don’t know anyone. And to be honest, at least a lot of the time, I don’t know that I really care about others – not the way it seems you are actually supposed to, if that makes any sense?

I’m writing to you A.J. in the hopes that you can talk to me because you have Asperger’s Syndrome and because you are a life coach. I don’t know who else to even try to explain this to. I don’t want to put my feelings on to you but I figure you must at least understand what I am talking about at some level.

Do others with Asperger’s Syndrome, if they are really honest with themselves, ever also struggle with this painful place that can rise up out of nowhere and leave you feeling that you just don’t belong anywhere? Do others feel as invisible, weird, and unimportant as I do? Even sometimes? Are there others out there like me who have no friends and no family and just feel like society sees them as worthless as a result?

I really feel like I want to just quit on life. I have no plan or anything right now but when I get to this place where I hurt so bad, I cry, the tears juts pour down my face. And I know that there isn’t anyone to help me with this. I know that this cannot be changed. I have Asperger’s and what that mainly means, among other things, is that I am lost socially. I stick out somehow. I have been bullied all my life. I am a freak. People see that I am different. I don’t even understand how they figure that out when they don’t even know me. I feel socially helpless and so clueless – just totally lost and that means painful despair for me”

If you have Asperger’s Syndrome and you are reading this and relate, I’d sure welcome your comments so that E can get some feedback other than the feedback I gave to her. I wonder if we don’t all know this place of despair when it comes to the reality of that intersection between Asperger’s and social struggles to varying degrees?

I hope that some readers will share their feelings and/or experience about social struggles and/or being bullied or teased and having Asperger’s and if that leads to feeling so frustrated it ends up going all the way to feelings of despair and/or hopelessness.

I have known 3 people with Asperger’s Syndrome who did take their own lives. Do we talk enough about Asperger’s Syndrome and suicide?

I must say that I strongly identified with most of the despair that they felt, at one point or other in my life. I myself sometimes do feel a significant amount of pain at the difference that I know I own when it comes to social “stuff” because I have Asperger’s. Not that that means the same thing every day or in every single social situation.

I also wonder if there aren’t aspects of socialization, whether understood, cared about, desired, or wanted at all, that still somehow end up effecting us in ways that leaves us feeling less than in the face of what is often a glaring difference. I must admit that there are times when I realize later how unaware of my own glaring difference I can be. And when the awareness arises later I can’t deny that it can be extremely painful. There is something very cyclical about this that continues to unfold in my own social experience, at times, that I may somewhat intellectually understand or have some insight about but that still, in the actual unfolding moments of, I remain mind-blind to.

Does the social isolation of Asperger’s ever push you to despair? If so, what do you do when you reach that place? What do you feel?

If you don’t want to share a comment here on the blog, but would like to discuss this, please feel free to email me at aspergeradults@yahoo.ca

© A.J. Mahari, May 8, 2009

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In my experience I get this "other world" feeling or have this "other world living" experience primarily within the social context of what it seems to mean, to the average neuro-typical, to be "in" the world or connected to the world out there. The world out there meaning the social "world" out there.

I really do not have a problem or issue at core with the awareness that I do often experience living in "another world". It is my inner world. It is the world of my narrow focuses (2 or 3 of them) of interest. It is a world that makes most sense to me. It is a world that holds within it the experience of my purpose, and who knows maybe even "the" purpose for my having Asperger's in the first place.

I think the problem, or the rub, if you will, for many with Asperger's about this living largely in another world comes from the reality that any world other than the neuro-typical "social" sphere such as it is, is somehow a less than way to be or place to be or both.

I think it is important to realize if you have Asperger's Syndrome (AS) that living in another world is part of who you are. It is part of how you are as well. It is part of your way of experiencing life. That doesn't make it less than the neuro-typical way of experiencing or living life – just different.

Different needs to be dissociated from meaning less than. What we do not understand about each other and each other's "worlds" needs to be accepted and validated and not judged.

Living in another world, my aspie world, doesn't mean that I do not have any connection to the "outside world" or to the neuro-typical world. I do. There are many ways and times that I have this connection. It is not a connection that I need per se. It is not a connection that fills me up by any means. It actually empties me out.

I do, however, continue to be most puzzled at the neuro-typical social world and all that entails. Do I connect to that some times? Yes. Do I always get how? No. Do I feel lost in that connection often, socially, yes. Does it matter anymore? No, not to me, not really. How come it doesn't?

Simply because I realize the importance of letting go of ever thinking that I will ever get that neuro-typical social world. I know I won't. So many times I have tried. So many times I thought I did get it, for a few minutes. So many times I thought I was in an experience of it only to come to find that, no, actually, it was its own version of hit and miss. That's okay. It is what is. And actually each and every time I experience the awkward feeling meeting of my aspie world and the neuro-typical social world I think that I do gain more insight and awareness into the differences – the ways in which I am different.

Does that insight and awareness mean anything in the actual unfolding of relating or experiencing neuro-typical social world? Nope. Intellectually, yes. In the unfolding of the relational dynamic, each and every time, no, not really.

I can map out more each time I gain more awareness but the truth is I make some of the same – what neuro-typicals may well think of as "mistakes" each and every time I leave aspie world to connect with their social reality in the not-so-effective ways that I actually do that.

There is a truth, in fact, though about living in another world, living in my aspie world and that is that even when it seems I can unstep it or escape it - it is a painful and often times frustrating type of desired (at times) illusion.

The trick is to first accept living in another world. Secondly, it is important to not allow yourself to feel shame or wrong or less than when you realize later or it is pointed out to you later how you didn't quite get to where you had hoped you had gotten to, socially.

It is what it is. Its meaning is only imposing if we let it be. We don't have to engage the idea (or what can be painful feelings) that we are less than because we aren't the "norm" or the average social majority.

Living in another world is just a part of having Asperger's Syndrome. I as someone with Asperger's Syndrome don't value or need or even really want the same type of socialization that most neuro-typicals seem to want, need, and thrive with. I thrive in different ways.

Have you ever stopped to really think about how many different worlds there really are within our one over-all world? There are likely more than you've ever even thought about. We are divided and sub-divided many times over by what we have in common and more often than not by all that we do not have in common.

It is and will be okay the minute you just accept that for what it is. Accept it. Celebrate who you are. Let go of the idea or concept that we all have to be the same. We aren't and we don't. No one is right and no one is wrong. That's the true beauty of difference.

© A.J. Mahari, May 3, 2009

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